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Grade question and other concerns

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Hi everybody, first post for me but I have been reading a lot of your stories, concerns and hope. I am 60 and post-menopausal.
I was diagnosed after an hysteroscopy and D&C with Endometroid endometrial adenocarcinoma, grade 2. The lining of my endometrium was 5 mm and I had never had heavy bleeding, just discharge, sometimes yellowish, sometimes pinkish for about 6 months.
Before the D&C I had a pelvic and transvag US that showed only a 1.5 cm intramure fibroid and the 5mm endo lining thickness.
The gyno said to me that he removed polyps during the biopsy but he never commented on them after the diagnosis of EEC

My question is, could I have a surprise with the type of cancer and/or grade during the hysterectomy that will be in 2 weeks?
I told the Dr that I had read that grade 1 was <5% of solid growth on the pathology sample and Grade 2 went from 5 to 50% (grade 3 is over 50%). I asked him about the percentage in my sample and he looked at me not too happy and answered that pathologists do not express that on the reports. Is it true?

The gyno-onc said that he will try to do robotic surgery but he may need to switch to open surgery. I am quite overweight and I had 2 c-sections and he will probably find adhesions according to him. He also noted a hernia while he was checking me and I asked him to repair it at the same time of surgery. Can they do a hernia repair with the DaVinci robotic surgery?
If he does robotic, he says that he will inject an ink to see the 2 sentinel nodes on each side and if he finds them, then he will remove them and test them with a frozen? pathology. If he does open surgery, he needs to remove quite a few more lymph nodes because he cannot map them to find the sentinel nodes as in robotic surg.

Any input, similar stories, etc, will be greatly appreciated Smile

Jacjac2's picture
Jacjac2
Posts: 44
Joined: Feb 2016

I am learning that the grade is often different from time to time.  Once I was told stage 4, then stage 2, then told they dont really stage recurrent.  To this day I am not totally sure what stage, just that it is recurrent.  I had the robotic surgery back in 2008 when they did my radial hysterectomy. Keep us updated.

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

After my biopsy, I was told that 95% of the time, it's stage I Grade 1 and that's what they were sure mine was.  After surgery, my hospital lab amended to Stage IIIA, Grade 1.  My second opinion, MD Anderson, tested the same tissue and came up with Stage IVB, Grade 2.  I had the robotic hysterectomy, and two sentinel lymph nodes were taken (one pelvic, one aortic.)  Both were negative.  I had lymphvascular invasion, positive pelvic wash, mets to the cul-de-sac, in one tube, and on the outside of the uterus.  <50% invasion into the myometrium, and my lining was 11 mm thick.  There was chronic, acute inflamed tissue removed from the outside of my colon, but it biopsied negative.  The surgeon remarked that  it looked like something exploded in my abdomen.  The pathology said the cancer was related to endometriosis, which I never knew I had.  They weren't sure if the tumor on the outside of the uterus was a second primary or mets.  No way to tell, they said.  That tumor was not even found by the first hospital.  All this to say, get a second opinion on your pathology!  I learned a lot!  (Treatment plan was the same - 6 cycles of chemo.  We chose not to do radiation, but to reserve it for a recurrence.)  The scan was clear after surgery and again after chemo.

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Jacjac2 and Armywife Laughing

Armywife, were you originally diagnosed with a D&C  with Endometrioid adenocarcinoma grade 1? It amazes me that the final pathology was stage IV, even with the sentinel nodes negative!  When were you diagnosed? 
I am getting very anxious about my surgery and final pathologyFrown
Thank you for your answer

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

Don't worry, sweet girl.  I was originally diagnosed in early April, 2017 when a transvaginal ultrasound came back looking unusual. Yes, it was endometrioid endometrial. I had a plain old biopsy with the little pipelle.    I had the surgery April 26th and they found some fragments of cancer in my posterior cul-de-sac, also known as the pouch of Douglas.   they said that mine was a very unusual presentation because the cancer penetrated less than halfway through the myometrium.   I'm figuring it had to be pretty close to the border between grades  1 and 2 to get two differing opinions.  My surgeon here still maintains that it shouldn't be a IVB because the fragments were still in the pelvis, but MD Anderson calls it "distant." I began chemo in June and finished in October.

  I want to encourage you to get second opinions and to just breathe.  It is what it is, and you will fight hard no matter what stage or grade you have.  God has the final say!  Take this just one step at a time.  Rest, smile, laugh, breathe, trust, have some fun and know that it's all going to be ok!  I'm sitting here 8 months out from chemo with a sassy pixie haircut and a grateful heart - tomorrow it could all turn sideways again but today is what we have.  Blessings!

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Thank you so much for your encouragement words and your positive outlook.
I would love to see your pixie haircutCool Laughing
Take care!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2546
Joined: Mar 2013

pato, from everything I have read here from the ladies, many of us have had the D&C and went in thinking one thing and found out something different after the complete hysterectomy.  Try to take a breath.  It is overwhelming, but you are doing everything you can right now, and this is a step by step process.  Get ready for your surgery, I saw where someone suggested the gas-x (a must!) and a few other things.  You will want to flush the anethesia out of your system so have lots of water and things to drink.  

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Thank you for your words. Because my original sample is grade 2, I keep thinking that if it gets an upgrade, it will be to high grade with all the baggage it carries...
When was your diagnosis and how are you doing?
Hugs :)

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2546
Joined: Mar 2013

pato, try to take this one day at a time.  Once the surgery is over and they find out what they are dealing with they will make a plan for you, and you work the plan.  I was dx on 4/5/12 with both the "typical garden variety" (Grade 1) and Uterine Papillary Serous Carcinoma, UPSC (Grade 3).  It was Stage 1A but because of the aggressive nature of the UPSC I had treatment of both chemo and radiation.  It is scary to think about, but it is one step at a time and the ladies will be here every step of the way.

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

You are right. One step at a time. So difficult to control the mind though, right?Smile

MrsBerry
Posts: 102
Joined: Dec 2017

I believe you can request a copy of your pathology report, you are entitled to that. But the advice already given here is so important - do not get too far ahead of yourself. Focus on what you already know, and getting ready for surgery. It is scary, but you can do this!

there is  A wonderful thread titled What do you wish someone had told you? If you search for it, I think you’ll find it very helpful. 

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

I tried to find the thread but nothing came up

bluebirdfriend
Posts: 15
Joined: Jul 2012

Thinking of & praying for you, Pato 58, as you go for sugery in the near future.  I was just diagnosed with endometrial cancer last week. (grade 1).  I too wonder what will be found at surgery but am living one day at a time by God's grace.  I was treated for breast cancer in 2012 and was on Tamoxifen for 5 years, so my Dr. thinks the cause for my cancer was the medication since that increases the risk.  I am wondering if anyone on here developed endometrial cancer after taking Tamoxifen?  Also, for those of you who had a D & C & then a hysterectomy, did you continue to have cramping & pelvic pressure a few weeks after the D & C?  My hysterectomy is scheduled for 7/31. 

Thanks!

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Thank you so much for your thoughtsSmile
Actually, my surgery will be in a few hours and I had a little panic attack while I was taking a shower a few hours back. Like I could not breathe!
I am so scared for the prognosisCry
Pray for me dear ladies

LisaPizza's picture
LisaPizza
Posts: 207
Joined: Feb 2018

Hope you're on the other side now and recovering nicely :) For me the first 24 hours were rough,  then got much better.

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

Hoping you are feeling well!  I had the DaVinci too!  I hope you had as great of an experience as I did!

Susie2's picture
Susie2
Posts: 15
Joined: Nov 2017

Hoping your recovery goes smoothly, Pato58, and for peaceful thoughts during the wait between surgery and pathology. For me, that was one of the hardest times. We are rooting for you!

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Lisa, Army and Susie Smile

Harmony09's picture
Harmony09
Posts: 75
Joined: Aug 2017

Hoping surgery went well and you're recovering comfortably:)

Sincerely,

Stacey

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Stacey. Really getting quite anxious about staging and pathology report Embarassed

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

It's normal to be anxious about all of it!  One of my friends wisely said to me, "You know what?  You're the same person as you were yesterday and will be after the scan.  All it's doing is giving you more knowledge about where to go forward.  It's not changing who you are."

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Armywife, your friend is really very wise.
I appreciate your forwarding this to meSmile
How are you into your treatment?
Hugs

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

Pato, I finished chemo in October and we are reserving radiation for recurrence.  Praying we never need it.

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Crossing fingers Laughing
Hugs

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